Stefan Johansson

Two years ago, I wrote about a large project that I initiated with another colleague and a "premiee"-parent, "Small child foundation" (Swe. Lilla barnet fond). The idea was to create a nation-wide charity foundation for research about newborn babies and their future health. Similar to March of Dimes. The "Lilla barnets fond" was officially founded late 2008, and since then we have worked hard (as volunteers) with strategic issues, including fund-raising and PR. This is a follow-up report with royal gossip! Yesterday we achieved a major milestone. The Swedish Prince Carl Philip, the official patron/protector of Lilla barnets fond, handed over the first research grants to the research projects, which were top-ranked by the foundation's scientific committee. In total, the researchers recieved 260.000 SEK (about 27500 EUR / 38000 USD). After the meeting, I and a few other board members met up with Prince Carl Philip and informed about our future ideas. Prince Carl Philip was very interested of neonatal care issues! He even wanted to be specifically involved in a future campaign... Picture? Here! And here!

Thanks for sharing this link!

Here's the link, chapter 15 is about neonatal resuscitation: http://circ.ahajournals.org/content/vol122/18_suppl_3/ (seems to be free full-text!)

Cardiovascular plumbing , that's one of my favourite topics! The pre- and the post-ductal saturations are both arterial saturations (blood from the heart), and refers to arterial oxygen saturation in vessels originating from the aorta before and after the ductal orifice in the aorta. Classically, the pre-ductal values are recorded in the right hand, but one can argue that left-handed saturations are roughly the same (http://www.biomedcentral.com/content/pdf/1471-2431-10-35.pdf). Arterial post-ductal sat's are measured in the foot. Post-ductal saturations become lower than pre-ductal when there is mixing of pulmonary blood through the duct, i.e. in congenital heart defects that are duct dependent. For example, severe coarcations or transpositions of the great arteries typically have lower postductal sat´s. This is the theoretical background to POX screening (http://www.bmj.com/content/338/bmj.a3037.full)

I completely agree with @feraszaman. I'm on the subway (!) but can share our practise, ie enteral feeds as tolerated. We aim For at least minimal enteral feeding with nec being on of few exceptions

I have done OMIM searches but have not come up with any good diagnosis. Have done various searches related to the ambiguous genitals / intersex conditions. Do you have more details of the clinical features: is there artrogryphosis of the knees? bilateral pes equinovarus? is the karyotype available? My principal thoughts go like this: is this a male genotype and aphallia, or a female genotype with sever virilization?

I completely agree. We are more likely to make to investigate infants born symmetrically SGA. But one needs to keep in mind, this is also the group where we find infants who are constitutionally small.

This is not a simple question at all! Actually, in my own work plave I have suggested for a long time that we should have written guidelines for investigations of IUGR/SGA infants. I have seen tons of TORCH screens, and have never come across a positive results when taken in a well small baby. Our current practise (no protocol there is...) is to investigate the smallest infants (typically less than -3 SD from expected BW or somewhat larger babies but in need of neonatal care) with TORCH, Urine-CMV, head ultrasound, chromosomes (regular karyotype). Infants between -2 and -3 SD, it depends. In well infants in maternity wards (normoglycemic, congruent birth weights in older children, normal maternal history ETC) nothing is usually done. But sometimes... TORCH It would be great to hear more input. I am sure many people would be very grateful if someone would like to share structured written guidelines.

Very interesting links indeed! (I had not come across crowdsourcing before (meaning "the process of seeking a problem's solution from a wide community")) Much, but not all, of the contents at 99nicu is public. I wonder about the proportion of laymen browsing here? Wish it could be possible to find out.

Hehe! Your alternative suggestion to assess Apgar is great!

Here's the publication that "catapulted" the use of propranolol for hemangiomas, it is availble in full-text at nejm.org http://www.nejm.org/doi/full/10.1056/NEJMc0708819 If you look among the "citing articles", I am sure you can find more information/case reports which can guide your decision. This is an interesting case report about hypoglycemia in an infant treated with beta-blockers after steroid therapy: http://www.ncbi.nlm.nih.gov/pubmed/20738795

I think you would need to be even more specific to be succesful in pubmed searches. For example, focus on one issue, such as pain management, postop wound inf, postop enteral nutrition after gi-surgery.

This discussion is moved to the virtual NICU. Please log in and continue the discussion here: http://www.99nicu.org/forum/showthread.php?23938-Persistent-white-out-lungs

Great resource! I especially found the lecture interesting about historical notes: http://www.aap.org/nrp/pdf/drWiswell.pdf Risk of respiratory distress in preterm infants, observation published in Egypt 1500 BC (!).

Not me. I should if I could

Thanks for posting this interesting topic. My experience is limited to morphine (pain, anxiety) and midazolam (jitterinezz, seizures). If these drugs are not used therapeutically before the end-of-life-decision, they are usually given as boluses i.v. or s.c. on demand. Your strategies seems much more refined than what I am used to - would be very interesting to hear more about your protocols. Do you have written protocols for comfort care? How do you choose routes-of-admin and drug-of-choice in various situations? Doses?

Also check this thread out: http://www.99nicu.org/forum/showthread.php?4655-managing-head-deformity-in-infancy

Just got the latest issue of Acta Paediatrica, there's a RCT on plagiocephaly therapy: http://onlinelibrary.wiley.com/doi/10.1111/j.1651-2227.2010.01872.x/abstract

Thanks for sharing your protocol!

Hi! This thread may get some input regarding management of subgaleal hematoma. http://www.99nicu.org/forum/showthread.php?15779-Septicemia-Subgaleal-Hemorrhage-and-complications I have unfortunately not come across any protocol or guidelines for management or early identification. But, we have great respect for suspected subgaleal hematomas and admission for surveillance of clinical status and blood counts are common, when the diagnosis is suspected. Treatment - if there is any indication of active bleeding, I advocate liberal use of blood products (plasma and erytrocytes, sometimes trombocytes), while waiting for the bleeding to stop.

Hi! In hospitals I have worked (i.e. in Stockholm) all infants (on the maternity wards / in the NICU) have been screened per the same protocol, with Oto-acustic emissions (OAE) after 24 h of age. Preterm infants from the NICU is screened at term/before discharge. If the OAE is pathological, the investigation is repeated typically within 24-48 hours. If a pathological response is persisting, the infant is referred for further audiological evaulation and auditory brainstem responses (ABR) are controlled. I am not an expert but OAE seems to give rather few false positive (pathological) responses. The investigation is done by a nurse assistant Mon-Fri.

No special method, besides positioning. Discharged babies are adviced to use a flat cushion while sleeping to promote positioning. I think this has been up before, try the search function too.

I would also suggest that you work hard to get nasal CPAP working. Unless the baby gets an infections with apneas, CPAP should be enough for respiratory support. Surfactant - I would not recommend it if the baby is already a few days old and the baby has reached its a descent "platue" when it comes to oxygen need and ventilation is ok. If RDS needs treatment, one dose of surfactant could probably be enough. Given the PPROM history, antibiotics is adviceable too. Slow but steady increase of enteral feeding. Final advice - skin-to-skin care and hands off!

Cognitive surplus. Have not heard about it? Not me either until I read this article in Wired. Now I am reading the book "Cognitive surplus, creativity and generosity in a connected age". Clay Shirky outlines very interesting ideas. In fact, he explains why 99nicu has happened The equation is: Educated people, some free time, a motivation to share, the social nature of man and modern tools, these factors aggregate the cognitive surplus and create communities. Like lolcats on ICanHasCheezburger.com. Or much more serious sites. Like 99nicu.org Will write a full review later, just felt I wanted to share...

I have no personal experience but if I remember correctly symtoms can stay for up to 3 months after birth. Since symtoms are due to the presence of maternal antibodies, one needs to await the spontaneous clearance of these. I suggest you let the infant "grow out" of the dose, i.e. you do not adjust doses per kg as the infant grows, given that the infant is feeding well and is cardiorespiratory stable. Please report back how long the infant was treated and at what doses, when you have the full picture. Greetings!